Monday, January 30, 2017

Sonzee's Walk

Sam and I have never sat our older kids down just to discuss that
Sonzee's genetic mutation puts her at an increased risk for leaving us sooner
than we would want, however, over the past 23 months various situations have
occurred that have exposed their innocent and (should be) sheltered minds to a
different reality than most children. They are smart kids and notice
everything, we do our best to discuss the most challenging topics when they are
not around, but then there is just the reality of it all that cannot be hidden.
We encourage an open dialogue because we want them all to be able to feel
comfortable and sort through their individual feelings in the way that best
suits each of them, so we have no secrets. While I took many classes in
psychology, I will be the first to admit that this department is completely out
of my league.

Last year prior to
Sonzee's month long hospitalization, our two oldest kids had a debate in the
back of the car over whether G-d allows children to die. It was settled
by explaining that we all go back to G-d when our mission is complete and
unfortunately for some it is when they are a child. I doubted the
adequacy of that answer for a while, but never wanted the answer to backfire so
I felt that for our religious belief that was the "safest" reply.
CDKL5 has forced our children to be exposed to nuances that other
children are (thankfully) spared. During
Sonzee's longest hospitalization our oldest decided after a week she did not
want to visit her sister in the hospital anymore. I was so afraid of what
the outcome could have been for Sonzee and that as our oldest got older she
might regret the decision she made. Despite me feeling torn on the matter,
we supported her decision and did not force her to go. Thankfully, the
outcome was positive. As we continue this journey our children get older
and obviously, their understanding of the situation becomes greater,
unfortunately for me I feel like I need a cheat sheet of the top 5 most
difficult questions a child can ask (randomly) regarding their medically
complex sibling so that I will be more prepared.

Yesterday we attended the Friendship Circle's Jonathan's walk.
Friendship circle is a fantastic organization that bridges special needs
families and the community by giving "buddies" to special needs
children. They also host events such as Jonathan's Walk to honor a child
who unfortunately passed away. (I would highly recommend those of my
friends who have a child with special needs to consider this organization near
you). Last night as Sam tucked in our oldest it was his turn to be faced
with the challenging question. (Yahtzee!). She has a glitter tattoo on her arm from the
walk and was looking at it when she asks, "Aba, when Sonzee dies will we
do a walk for her?", Sam was caught off guard so he said he didn't want to
talk about (I won't hold it against him, but we are creating a list of answers
that explain how we all handle the situation differently and while we encourage
questions and discussion sometimes a person isn't wanting to have the
discussion right then.). Our daughter then continued to say, "Yes,
Sonzee's walk, I like that, we'll do that".

We can add this to the group of "things that are challenging
when you have a child who has CDKL5 or a terminal illness and he/she has
siblings". I wish her mind did not have to have these thoughts.
I wish it was not such a "routine" type of thought, as if she
was asking for a drink of water before bed. I do not know what hurts me
more right now, the fact that one day we might have a "Sonzee's
walk", the fact that my 7-year-old is the one who mentioned it, or the
fact that we are all exposed to this as "our life".